The largest-ever public and stakeholder discussion on stem cells in the UK reported its findings in December, 2009. It was commissioned by the Biological Sciences Research Council (BBSRC) and the Medical Research Council (MRC), whose aim was to capture the opinions, aspirations and ambitions of 200 members of the public and almost fifty stakeholders on the science and ethics of stem cell research.
Funded by the Government’s Sciencewise programme, the project was part of a coordinated response to a recommendation in the 2005 UK Stem Cell Initiative Report (the Pattison Review ) which called for a ‘sustained dialogue with the public on stem cell research’.
Public engagement in science and medicine has never been so important. With recent headline-grabbing stories on designer babies, stem cell therapies and nanotechnology, it is critical that there is two-way communication between scientists and the public to create a society that appreciates the rationale, aims and outputs of research, and enables scientists and policy makers to understand and respond to public aspirations and concerns.
At the launch of the results, Lord Drayson, Minister for Science and Innovation, said: ‘The government takes public dialogue extremely seriously. In areas such as stem cell research – which are so important to this country’s future – it is vital that any public concerns are listened to and acted upon.’
The BBSRC and MRC commissioned a consortium, led by the British Market Research Bureau (BMRB), to carry out the research over the course of 2008.
Forty-nine stakeholders were assigned into one of nine groups comprising research scientists; clinicians; church and faith groups; pro life groups; funders of research; medical research charities; regulators and government; private sector organisations; and social scientists and ethicists. As well as this, 200 members of the public were selected to reflect the socio-economic profile of each location studied and the range of UK attitudes to stem cell research.
Stakeholders were interviewed during in-depth telephone conversations which lasted around 45 minutes. This provided both primary data for the research itself and also helped to shape the content of the deliberative public workshops.
The series of workshops in the summer of 2008 in London, Cardiff, Bristol, Newcastle and Edinburgh took the form of structured conversations between experts, non-experts and policymakers. The first workshop introduced stem cell research and explored general aspirations and concerns for the science and clinical treatments. The second looked in-depth at the social and ethical issues related to the sources of stem cells. The third focused on future applications of stem cells and the wider social implications of stem cell banks, therapies and clinical trials.
Fifty members of the public also took part in an exercise which ranked a series of statements made about stem cells relative to how much they agreed or disagreed with them.
The results revealed high levels of public support for stem cell science and technology, although this was conditional on ensuring that government funding is focused on ‘serious’ medical conditions rather than cosmetic uses. However there was considerable debate about what constitutes a ‘serious’ condition.
Several participants felt, for example, that conditions such as baldness, and even major medical conditions such as diabetes could be managed effectively using existing interventions. There was general acceptance of using in vitro fertilisation (IVF) procedures to provide embryonic stem cells, as long as consent was gained and the process regulated. However, there were a significant number of participants who held a strong ethical conviction that the creation of embryos for research was wrong.
Confidence and concern
The dialogue showed that, if the public receive clear and sober information, they have no problem understanding and digesting complex science.
The outcomes indicate that the public is keen for the UK to maintain its technological and regulatory lead in stem cell research. Both the public and stakeholders valued investment in basic research. The public would also like to see more emphasis on preventive medicine, through actual cures as a result of research and through individuals taking control of their own health.
Academic scientists were perceived in general as being open, honest, and working for the public good. There was also felt to be an opportunity for funders, including research charities and government, to work together to further raise the profile and resources for stem cell research.
One of the key public concerns was the involvement of the private sector. The report spells out the view that for public trust to be maintained it is important that future treatments should reflect public rather than solely commercial interests. At the launch, Sir Leszek Borysiewicz, Chief Executive of the MRC, responded to audience questions on this subject, stressing that the involvement of the private sector is essential for translation of basic science to clinical results for patients.
A range of groups including researchers, clinicians and the public commended the supportive legislation of UK stem cells research, but also viewed the number of relevant regulatory authorities as cumbersome. It was felt that coordination between regulators needed to be improved to ensure the seamless transition of research into routine clinical practice, which takes account of the novel aspects of cell-based therapies.
Ultimately this study is an example of the importance of enabling people to engage with scientific research and the issues it raises. Uncertainties in stem cell science should be communicated openly if the public debate is to avoid being dominated by hype. Substantive areas of public interest include the private banking of cord blood and the potential of induced pluripotent stem (IPS) cells, adult cells which are reprogrammed to produce stem cells.
The report will help to inform decisions that research councils and others will make as stem cell research matures and treatments move closer to clinical application. Policymakers from the research councils and government departments have already had the opportunity to explore some of the areas covered in the dialogue and use the results in decision-making, for example in developing guidelines for consent and in forming policy on cord blood banking.
The BBSRC and MRC are committed to incorporating public views into policy and strategy development. Sir Leszek used the Human Fertilisation and Embryology (HFE) Act’s passage through parliament last year as an example of the importance of ensuring that research takes the concerns and aspirations of UK society into account. After public consultations revealed a moral unease surrounding the creation of human-animal hybrids, the government initially issued a draft HFE bill that would have made this practice illegal. However, following extensive engagement between scientists and the public to increase understanding of the therapeutic potential of chimeras, parliamentarians voted for the inclusion of hybrid creation in the HFE Act.
Although large structured dialogue events are important, it is fundamental that everyday practice and discussion of science takes into account societal views. Public engagement should be an ongoing process.
To download a copy of the BBSRC and MRC stem cell dialogue, please visit www.mrc.ac.uk/Sciencesociety/Publicinvolvement/Consultations/Stemcelldialogue/index.htm